Shared decision-making in advance care planning for persons with dementia in nursing homes: a cross-sectional study

Advance care planning (ACP) is a process which enables individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care providers, and to record and review these preferences if appropriate [1]. For persons with dementia, ACP is of utmost importance due to the gradual loss of decision-making capacity [2‐4]. Research indicates that persons with dementia value these opportunities to increase their involvement in care choices, making them feel empowered and informed [5]. Though it is recommended to initiate ACP early, while the person with dementia still has sufficient mental capacity for being able to think about and express their preferences, its actual realization is often lacking due to both caregivers’ and families’ hesitancy to discuss the topic [1, 6‐9]. Several key moments, such as the transition to a nursing home, can serve as additional opportunities to discuss ACP [10]. However, only 11.8% of persons with dementia in Belgian nursing homes have discussed their preferred care at the end of their life, having missed multiple opportunities to explore care preferences [11, 12]. Health professionals hesitate to discuss end-of-life choices, citing both individual and organizational barriers to ACP [13].

Shared decision-making (SDM) provides an approach to discuss ACP in a participative and informed manner. It is defined as a process in which both patient and healthcare professionals make decisions together, using the best available evidence [14]. SDM embodies the principles of patient-centered care, which seeks to provide high quality care by acknowledging the personhood of patients in all aspects of care, and is particularly relevant in ACP for this reason [15, 16]. Benefits of SDM include improved knowledge on health and care topics, increased participation in decision-making, reduced decisional conflict and improved confidence and coping skills [17, 18]. A number of guided approaches to SDM have been created to increase its uptake, including the three-talk model by Elwyn et al. [19, 20]. The model stipulates three steps to achieve SDM: introduce options (choice talk), discuss these options (option talk) and make a decision after exploring preferences (decision talk). It provides a practical, easy to teach way to train clinicians while being aligned with a more extensive conceptual model of collaborative deliberation [21].

Despite existing research underlining the importance of SDM in ACP and the availability of guided approaches such as the three-talk model, little is known about the current level of SDM during ACP conversations between nursing home residents with dementia and health professionals. Do residents with dementia consider themselves involved in the decision-making process? Does this view align with the perception of the health professional? Moreover, how do these views compare to the steps indicated by the three-talk model? Finally, do health professionals consider SDM as an important approach to ACP as indicated by literature and do they feel competent enough to implement the approach in practice? Exploring these questions might provide more insight into the reasons for the lack of SDM in practice [22].

This study explores how health professionals and residents with dementia perceive the level of SDM during ACP conversations. In addition, professionals’ perceptions of the importance of SDM, their perceived competence and self-report about the frequency of utilizing SDM are investigated.

We compared residents’/relatives’, professionals’ and external raters’ perspectives about the use of SDM during ACP conversations. Furthermore, we measured professionals’ perceptions towards the importance of SDM, their competence in applying SDM and how frequently they practice SDM.

Overall, residents with dementia and relatives appreciated being involved in making decisions about their (health)care. However, they disagreed with professionals on which topics were addressed, and on the extent to which treatment options were discussed. Half of the persons with dementia or their relatives could not provide the topic of the conversation, with only a quarter of the residents indicating ACP as the subject of the discussion. Possibly, residents and relatives are grateful for being able to discuss their care as such, and thus give high scores, even though they remain unaware of having discussed ACP.

Our study further shows that professionals consider providing information on different care options and discussing the (dis)advantages of options as the least important items of SDM. Furthermore, external raters noted that professionals have difficulties assessing residents’ preferred approach to receiving information to participate in decision-making. Therefore, assessing residents’ need for information, as well as extensively explaining different treatment options during conversations, is crucial to discuss ACP in a person-centered way [22]. This information could be provided by the nursing home to inform residents and family members about the course of dementia and their different options [33]. Residents or relatives could also be empowered to ask for this information themselves. The ‘Ask 3 Questions’ campaign is an example of an intervention aimed at helping persons to identify what to expect and increase involvement [34].

Third, although professionals and residents’ or relatives’ ratings of the use of SDM in ACP conversations were mostly positive, the OPTION-12 scores of the external raters showed a number of shortcomings in the use of SDM compared to the three-talk model of Elwyn et al. [19, 20]. They agree that professionals are able to identify problems that require decision-making, but note that the conversations were often focused on medical aspects, leaving no time for care preferences. The topic of ACP was rarely introduced, which often resulted in anxiety when topics such as resuscitation were brought up. Checklists were frequently used, leading to broad, close-ended answers. Conversations where preferences were discussed more in-depth, scored significantly higher. Limited information giving resulted in lower SDM scores. Although residents were present in more than half of the conversations, they were rarely actively involved by the professional, which resulted in significantly lower OPTION-12 scores. This finding corresponds with other research indicating that person-centered communication is a challenge [12, 35]. The gap between external raters’ scores, professionals and relatives’ scores highlights a discrepancy in the application of SDM between the three-talk model and daily practice methods. Possibly, health professionals lack role models in how to apply SDM in their conversations [36]. Since they often are the sole person in charge of discussing ACP, it could be helpful for professionals to learn from others in other wards or organizations.

Our results indicate that future training programs in SDM should focus on both skills and knowledge development. Professionals’ perceptions towards the importance of SDM, how competent they feel in applying SDM and how frequently they participate in it, are all positively correlated. Professionals consider SDM to be an important approach to ACP. Furthermore, they feel competent in utilizing the associated skills and indicate applying these frequently, albeit less often than expected based on their importance rating. A lack of experience in conducting ACP conversations could be at the basis of this observation, indicating the need for skills training such as role-play exercises and learning from on-site role models. Regarding the need for more information on ACP, our results indicate that professionals still seem to consider ACP a topic to be discussed during crisis situations, with much less emphasis on exploring daily care preferences. This is in contrast with evidence-based recommendations [37]. Finally, our study sample shows that a wide range of health professionals is involved in ACP. To ensure that all team members are informed and work towards realizing the residents’ preferences, it is crucial that this information is exchanged in a clear and concise manner. Thus, future training programs could target interprofessional teams and emphasize collaboration.

We consider the inclusion of three different perspectives when assessing the use of SDM skills in ACP conversations, in addition to professionals’ self-report questionnaires, a strength of this study.

The fact that wards could select which recordings to send in for analysis possibly resulted in selection bias. Another limitation is the low response rate from residents and relatives on the SDM-Q and CollaboRATE questionnaires. We included CollaboRATE as an alternative in case fatigue would prevent residents or relatives to fill in SDM-Q. However, either both questionnaires were filled out or neither. It is possible some residents or relatives did not respond to our call for feedback because they feared reprisals by the nursing home staff, even though we provided anonymized, pre-stamped envelopes. This study does not include information on the level of cognitive impairment among residents who participated. We relied on the expertise of the professionals to decide who could or could not be included. However, since the degree of cognitive impairment could have influenced the level of engagement in conversations about ACP, as well as the responses on the CollaboRATE measures, this needs to be considered when interpreting our results. Furthermore, we have limited information on the differences and similarities between nursing homes who did participate and those who did not, limiting the generalizability of our results to the Flemish nursing home sector as a whole.

Residents with dementia and their families are grateful when involved in discussing their care, but find it difficult to report what is actually discussed during these conversations. Receiving more information about ACP, or by stimulating them to ask for this information themselves, could provide them with the knowledge needed to prepare for the conversation. External raters observe a discrepancy between the three-talk model of Elwyn et al. and daily practice methods [19, 20]. We recommend a training in SDM for nursing home staff. These training programs could focus on providing staff members with knowledge on SDM, increase their skills in applying SDM and emphasize team-based collaboration to increase the level of person-centered care in nursing home wards for persons with dementia.